New PNET Question Re: Surgery (I'm in bit of a pickle)

I know it's hard to wait but surgery is major. Are you having symptoms besides fatigue? Is the NET causing pain or blocking things so your body can't work properly? If so I'd pursue surgery but if not, I'd wait. That's just me. 8/12 isn't too far off and a painless scan might give you the info you need on how to proceed. And yes, I have super tired days where I'm in bed by 8.

Hi Sue
I had a modified Whipple and it’s a big surgery. I had my first surgery in 2017 and my tumor was just under 1 cm and the surgeon missed it. I waited 18 months for better insurance and went to a NET Specialist and a surgeon at Mayo I trusted and had a second surgery in 2019.
I still have GI issues and other residuals popped up from such a big surgery. It changed your life in a big way.
Please seek a second or even a third opinion with NET Specialist before doing anything.
Wishing you well!🙏💜

Similar. 1.6 cm pNET. I had an opinion to wait as well but wanted a second opinion to say the same but it was to remove it. Mine was mid pancreas but very close to the SMV. 3rd opinion was to remove so I chose to do that. All scans showed gall bladder stones which I’ve never had that kind of event. I was told about the splenectomy and chose to have them preserve mine.
So since my pNET was small but also squishing into the pancreatic duct making half my pancreas wither away, I did it with a gall bladder removal and preserving the spleen but vein ‘tore’ which made it become an open surgery and they patched the tear. Well the spleen infarcted and now is liquifying so it’s useless. Should have had it removed. I’m glad I did it. April 23. Turns out it had spread into one lymph node and waiting now for an oncology endocrinologist to see if we do any further treatment. My story. All the best!

Welcome, @suziktodd. You've received some supportive and helpful posts from members. I'd like to add my welcome and a couple of thoughts. If seeing a NET specialist at Mayo Clinic is an option for you, you might consider a second opinion at Mayo Clinic in Jacksonville. You can get started by submitting a request here: http://mayocl.in/1mtmR63

Whether you are a Mayo patient or not, you are always welcome to attend the monthly meetings led by a Mayo Clinic NETs social worker. The next meeting is August 7.
- Neuroendocrine Tumor Support Group Meeting: Zebras https://connect.mayoclinic.org/event/neuroendocrine-tumor-support-group-meeting-ne-fl-neuroendocrine-cancer-zebras-1-e9cf5211/

Sue, when is your next oncology follow-up after the CT scan?

Hi!

Awesome, thank you for all this wonderful information. Wow, I’ve gotten some really great responses. This has been very helpful. My next CT scan is August 12. And then I usually schedule the follow up appointment within the next three days.

8/15

Thank you for asking!

Hi Sue!
I too was in the situation of watching waiting, which I did for 6mos. My pnet showed “modest growth” from 1.8 to just under 2cm. I of course pursued surgery. I had a robotic distal pancrectomy. (Definitely easier surgery then whipple .) Surprisingly, it was discovered that I also had 6 of 8 lymph nodes positive.( surprised everyone) as it had not shown up on CT, MRI or Dotatate PET.
In hindsight, as it is always 20/20 I wish that I hadn’t waited for surgery.
My personal believe from experience is that robotic is the way to go. (In the hands of a highly skilled, highly trained, surgeon who preforms these surgeries frequently.) But again, just my personal experience and opinion.
Bottom line for me, is I wished that I hadn’t ultimately waited for 8 mos to have surgery. I had reasoned that I had no symptoms and felt fine. My Drs thought it prudent, so watchful waiting seemed to make sense…..and surgery and it’s unknown outcomes could possibly cause me to actually become diabetic, or have a fistula, or need to take digestive enzymes, all fears that never materialized in my case.
I am now 3 years 4 mos post diagnosis, and 2 1/2 post surgery, get 6 mos MRI surveillance. Still feeling great.
Best of luck to you, there is no one size fits all when it comes to NET. Make the best decision for YOU, get specialized Net Drs on your team to help guide you, and advocate for yourself at all times!!

There is a net specialist at Duke, Michael Morse. There's one other in Concord, NC. You can find their info at http://www.netrf.org under Find a Specialist.
Also, one of the top net surgeons is in Louisiana. Phillip Boudreaux. His info is also on the netrf site.
It's very important to seek out a net specialist as many general oncologists don't have the required knowledge to properly treat this disease, which is a very different animal.
Was the tumor biopsied? What is the ki67 rate? This will tell you how aggressive (or not) it is.

# 1 issue is relentless fatigue where I have no choice but to sleep, b/c I cannot keep my eyes open, not close to the side effects like leaks, and etc. That comes in phases, like 3 hours I am wide awake, then all of a sudden I cannot keep my eyes open. So, an additional follow question would be, wait for it to cause more issues or get bigger, then consider it surgery, and if so, any thoughts on 'open' vs. robotic? You're right, 8/12 is now right around the corner and is coming up fast.

Thank you, Em, for sharing your story with me. That's gives me a good understanding too, wow, it sounds like with the smaller tumors, they can miss it.

Milford, thank you SO much for sharing this, now I have a better understanding of what they mean when they say additional risks and weighing the pros and cons. That is interesting about the removal and yes, my initial thought would be the same, to try to keep it. Now, I have a better understanding. All the best you as well.